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Just My Rant

In July last year (2010) I started getting some minor symptoms,

at the time though there was a bout of gastro going around my work so of course I just wrote it off as that. When everyone else started getting better and I didn’t, I had a feeling something was not quite right, next thing I knew I had lost five kilos…then another five… 12 kilos in total bringing me down to a very scary weight! I went to see my GP, she has been fantastic through all this, and she prescribed some blood tests testing for celiac and lactose intolerance and a stool sample. I was absolutely devastated at the time because I had always had such an appetite and such a passion for food, the thought of not being able to eat bread or pasta was terrifying (if only I knew what was to come!). A week or so later after a negative result on the tests, another doctor’s appointment I had lost all ability to get out of bed or stay awake for longer than a few minutes, my G P recommended I have a colonoscopy and an endoscopy so they could figure out what was wrong.

The day of my surgery I was diagnosed with ulcerative colitis and immediately started on prednisolone. By reading this website, I have been one of the lucky ones, the main side affects I had from this medication were a bit of hair loss and instead of depression there were a few days where I did feel abnormally elated, quite strange given the circumstances!! Since then I have been taken off prednisolone and am now on salofalk and imuran (was taking iron supplements too but have since gotten my iron levels back up to a normal range). Overall I am fairly healthy, and in comparison to some of the other stories I have been reading I feel absolutely terrible for feeling sorry for myself and my state, there are others who have this disease far worse than I have at the moment even though my specialist has told me I was one of his worse cases when I first came, my heart goes out to you, it really does.

Being diagnosed with a chronic illness is something which takes a bit of adjusting to, only know that I am better I am starting to realize what this means.

The hardest thing for me was that I have never really been sick in my life,

before this I had never taken any over-the-counter painkillers (such as pandol), antibiotics or anything, the sickest I have ever been would have lasted for less than a week before I would be back playing the sports I love. Assuming the sick role has been so difficult for me because I have always felt a sense of pride of how healthy I was, I did everything right, good diet, heaps of exercise, why should this happen to me?? Now when I think of myself I don’t see myself as I used to be, I see my disease. I hate what is happening to me and that I have no way of controlling it and I feel so guilty that only now am I starting to feel this way when everybody has praised me for the last few months on how well I am handling this, I feel like I am letting people down by feeling this way now.

The main reason I stumbled upon this site is that for the last week or so I have had quite severe joint pains, mainly in my back. Reading some other peoples posts, imuran seems to be the most likely cause for this (other than the disease itself), however I have been taking imuran for about 6 months with no previous problems. Truth is I am actually quite worried about my kidneys, as the pain seems to be in the right spot and I have also had a slight fever all week. I have had a blood test done this week, just my usual one which tests for everything under the sun. I really don’t want to go back to the doctor as after visiting him every week I was getting a little sick of him!! And he just told me that as long as my blood tests remain fine I don’t have to come back for 6 months!!

As a psychology student at university, one thing that did particularly bother me about the medical system here in Australia is that I was not referred to see a psychologist or a dietician (I know they say it’s not diet or stress related but realistically…how can it not be) or physiotherapist or any other allied health service. Managing a chronic illness, or any illness, involves a much more multi-disciplinary approach than purely the ‘fix the symptoms’ mentality of the medical profession. I was just wondering if any other countries the multi-faceted approach is utilized more than it is here?

I think that’s all for now! Feels good to finally get that off my chest.

-Daina in Australia

Medications:  Salofalk (mesalazine): 4g/day, Imuran (azothiaprine): 100mg/day


Daina’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!!

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3 Responses to “Just My Rant”

  1. AdamApril 21, 2011 at 10:04 pm #

    Hey Daina,

    You pose a great question at the end of your “rant”. About what’s the program in other countries. I’m so happy you wrote/asked that too since its one of the main reasons I started the site over a year ago, to find out what’s happening in other countries, and if there’s any hidden secrets out there to get through this UC stuff.

    I can only answer based off my experiences so far with the Western medicine world in the USA, and it appears to be very similar to what you are seeing out there in Australia, at least with the physicians and doctors I’ve seen so far at Stanford hospital, PAMF, and the Mayo Clinic in Arizona. There are most definitely exceptions, but by and large in my opinion which is based off reading the hundreds and actually more like thousands of stories and comments from this site, the treating the symptoms with medications is very popular and brings great success to many, but unfortunately not to everyone. In severe cases where medications are doing nothing, surgery is often the option(and many of those patients are very very happy with their decision to have surgery) Ashley and Curtis’s surgery stories come to mind first for me.
    Then there’s the old diet idea. You can read my personal posts to get my take on that, but all of my GI’s 7 in total have said diet has nothing to do with it, and that is about par for the course from what others have said.
    My best advice to you would be to seek out a doctor in your are who works with many UC patients. And make sure you are on the same page as that doc. All docs are different, and there will be one that you actually like and trust, and want to go looking up the deep dark hole with the little camera thing when those times come.
    OK, enough of my rant, take care,
    Adam

  2. CurtisApril 22, 2011 at 10:27 am #

    I was in the exact same situation as you! I have been healthy my entire life, have payed soccer competitively since I was 4 years old and even during my 4 years of college! I don’t drink, I don’t smoke and have always been very fit, then BOOM, all of the sudden this disease takes me down out of nowhere! I went from being 160 pounds to 118 pounds at my worst…I was so shocked when I looked at myself in the mirror, and by that point none of the medications were working so the only option was surgery for me because mine was so severe. At that point, surgery didn’t bother me at all because I was so low to the point where I figured that anything to help me feel better would be worth it. So far, it has been almost 2 months since my first surgery and I feel great! Yes I have to have an ileostomy for about 6 months until the final surgery is over, but that is something I am happy to live with if it enables me to be pretty much like a normal person at the end of it all. I am up to 140 pounds now and I am eating whatever I want!! I am very happy with my surgery option..even though it wasn’t really an option, more of a life or death situation kind of, but still, I am UC free because they took the infected colon out of my body so I am free of the disease….and a little bit lighter because I don’t have that extra weight to carry around!

    You just have to try and stay positive. I just graduated from college this past December, and my plan for 2011 was to go to some professional soccer try outs, it has been my dream since I was a kid, but I got shot down by this disease in early January. Being in the hospital for 29 days total surely broke my spirits but I was so focused on getting healthy again, that I wasn’t really thinking about my soccer career. Now my goal is to come back stronger than I was before after all of my surgeries are done and have a go at playing soccer professionally again. Staying positive is the MOST important thing!!

    Hopefully you find what works for you, whether it is medications or if you ever end up thinking about surgery(you probably won’t have to though because most cases aren’t as severe as mine was) but it’s not the end of the world if surgery is the way to go. I hope everything works out.

  3. KatieApril 26, 2011 at 7:37 am #

    I have had active UC for about I years straight now, I have never been in remission, and I have had some horrible reactions to prednisone and Remicade. Not once has my GI doctor brought up my mental health. It wasn’t until I ended up in the ER(they didn’t help at all) and was told to have a follow up with my family physician who I hadn’t seen in years. He was the one who diagnosed my with anxiety and made me realize that it’s okay to feel sorry for myself from time to time and that this disease has changed my life in numerous ways. So to answer your question, no, at least my doctor didn’t.

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